1. Models of Care for Dementia Transforming experiences and outcomes for people with dementia & carers and families Edana Minghella Email: edana@minghella.com (C) Edana Minghella 2012

2. How we got here Talking to commissioners, providers, staff and other experts Listening to people with dementia & carers Visiting services Non-participant observation/shadowing practitioners Reviewing good practice, policy and relevant literature (C) Edana Minghella 2012

3. Why have a revised model? Changing expectations Clarity of purpose Improving and measuring outcomes Policy changes Resource pressures Ongoing dissatisfaction Revolutions only happen when things are already changing..... (C) Edana Minghella 2012

4. Consistent themes from people living with dementia Essentials ApproachServices Relationships Identity Support early on (C) Edana Minghella 2012

5. What is a model of care? The condition itself The person with the condition Service aims and structures Understanding of effectiveness Guiding principles (C) Edana Minghella 2012

6. From disease-centred principles To person-centred principles Principles From a debilitating untreatable terminal illness of old age To a long term condition experienced by a person & their family Dementia From a frail old person without mental capacity To a person with a life story, who will need help & increasing levels of support as the condition progresses Person with dementia From reactive & restricted secondary care services, with voluntary sector add-ons commissioned & provided separately To proactive community & primary care services, anticipating and responding to the person’s journey through dementia, commissioned & provided collaboratively Services From a sense that very little helps To a consensus that positive outcomes can be achieved Effectiveness (C) Edana Minghella 2012

7. Understanding the person’s journey Phase 1: When memory problems have prompted me, and/or my carer/family to approach my GP (or other) with concerns Phase 2:Learning that the condition is dementia. Phase 3:Learning more about the disease, self-management, options for treatment and care, and support for me and my carers/families Phase 4:Getting the right help at the right time to live well with dementia, prevent crises, and manage together Phase 5:Getting help if it is not possible to stay at home, or if hospital care is needed Phase 6:Receiving care, compassion and support at the end of life. (C) Edana Minghella 2012

8. Person-centred outcomes at each phase (1) Phase 1 I am confident that my primary health care worker/GP has taken my concerns seriously. S/he understands the nature and cause of memory problems, and will refer me quickly for an appropriate assessment if needed. Phase 2 If I am given a diagnosis, it is delivered with sensitivity. I am able to discuss the condition with a health professional; my questions and concerns are addressed; and I receive relevant information at the right time for me, and in the right way for me Phase 3 My personal circumstances, and my needs, preferences, strengths and assets are acknowledged and understood. As a carer/family member, my contribution and experience inform the assessment, and next steps. My own information and support needs are considered and addressed. (C) Edana Minghella 2012

9. Person-centred outcomes at each phase (2) Phase 4 I can access a range of services & opportunities that help stay at home as long as possible As a carer I can access support including training to help cope with the ongoing caring role Phase 5 I know that I will be respected as a person and provided with high quality care People supporting me will have the knowledge, skills and attitudes to understand my condition, and care for me with compassion. I feel safe. Phase 6 I am confident that everything will be done to ensure that I die where I want to, well supported & with any pain well- controlled (C) Edana Minghella 2012

10. Good practice examples show... Collaboration and partnership (for example, between commissioners, health & social care providers and non- statutory sector) Practitioners who demonstrate not only knowledge and skills, but also empathy, flexibility and compassion and carry those values into their everyday work Clarity of roles Involvement of people living with dementia Foresight and an emphasis on planning and early intervention in order to manage the person’s journey proactively. (C) Edana Minghella 2012

11. Service design & commissioning implications Range of services working together, including voluntary sector, designed to keep people at home as long as possible Concept of person’s journey indicates what, how and when services should be provided, linked to QIPP Primary care in lead. Mental health & specialist services only when needed with specific role. Support, education and training in primary care based services Commission education, training and co-production with carers Involvement of non-service sector, community resources, etc Capacity building in non-specialist services (eg. residential care) (C) Edana Minghella 2012

12. Some implications for service delivery Individualised person-centred care along the whole pathway Involvement Work proactively Accessible services, inclusive approaches Training others Clear roles, including navigator Imaginative use of existing resources & opportunities Build relationships to work proactively and preventatively Limited or no use of antipsychotic medication Information Manage risk collaboratively and imaginatively Advance planning and good end of life care (C) Edana Minghella 2012

13. Key messages Recognise the dementia journey, and work sensitively, proactively and preventatively to help pre-empt and manage crises Deliver personalised, co-ordinated care that focuses on the unique person, and design services around person-centred outcomes Work together with people living with dementia, including carers, recognising their needs and assets Manage the range of issues associated with dementia – not just ‘mental health’; social engagement is critical. Make sure services and opportunities are joined up Provide services predominantly in the community, led by primary care. Specify the role of specialist services and treatment, promoting therapies, rethinking the role of inpatient care and reducing reliance on medication (C) Edana Minghella 2012